25% M.E. Group is a charity registered in Scotland (charity number SC034265) and is a “controller” of the personal information that you provide to us when you become a member, when you contact us through our website, by email or phone, by letter or when you make a donation, unless otherwise stated in this privacy notice.
What we need
When you register as a member of 25% M.E. Group or renew your membership, we will ask you for the following personal information:
* your name, address, telephone/mobile number, email address, date of birth, etc.;
* your bank account number, sort code, card details;
* information regarding your health and ME, where appropriate;
* personal summary details (including name, address, telephone/mobile number, email address, date of birth) for our members’ contact list should you opt-in to having your details included;
* details obtained under your authority via a signed mandate;
* details regarding your carer if applicable, including name, address, telephone/mobile number, email address and personal summary details for our members’ contact list should your carer opt-in to having their carer’s details included.
We may also collect the following personal information when you contact us by post, telephone and email or make a donation:
* your name, address, email, telephone/mobile number;
* carer’s details if applicable, including name, address, telephone/mobile number, email address and personal summary details for our members’ contact list should the carer opt-in to having their details included;
* ME Support Group details;
* ME Campaign Groups details;
* charity advisors’ details;
* professional agencies details, Members of Parliament, fundraisers.
Why we need your personal information
We need to collect our members’ personal information so that we can manage your membership. We will use our members’ personal information to:
* send you membership communications by post or email in relation to essential membership services, including but not limited to, general meeting notices, membership renewals, membership fees’ information, ME campaign issues, e-news;
* promote our charitable objects to relieve the needs, promote the welfare and advance the education of those suffering from the problems related to the severe
effects of ME (Myalgic Encephalomyelitis), their families and carers by the provision of newsletters; relevant information regarding essential ME issues, members support via the advocacy and listening ear service;
* our events may be filmed or photographed and your personal information may also be used in images captured from our events, which we use for promotional, education and development purposes such as our newsletter, website and other campaigning publications;
* monitor and develop participation in 25% M.E. Group by monitoring members’ engagement and participation through involvement in ME campaigns, contributing items for newsletters and other group publications, engaging in fundraising activities and inviting our members to participate in surveys for researching and development purposes;
* publish your name, address, telephone/mobile number, email address, date of birth and personal summary on our contact list where you have agreed to such information being published;
* respond to and communicate with members regarding your questions, comments, support and advocacy needs or complaints, concerns or allegations in relation to 25% M.E. Group and provide updates from time to time regarding our activities;
* we may from time to time publish articles and correspondence from members in our newsletters and other publications which may include details such as name, address, email and telephone/mobile number (with your consent);
* in relation to membership of any special interest groups organised by volunteers within 25% M.E. Group, those volunteers may hold personal details including name, address, telephone/mobile number, email address with the member’s permission.
If you do not provide us with all of the personal information that we need to collect then this may affect our ability to offer the above membership services and benefits.
We also use personal information to:
* promote our charitable objects to relieve the needs, promote the welfare and advance the education of those suffering from the problems related to the severe effects of ME (Myalgic Encephalomyelitis), their families and carers. We employ staff, utilise volunteers, donors, members of the management committee and our advisors to assist in our aims and objectives and certain of their personal details such as name, email, telephone/mobile number, qualification, may be utilised on our stationery, newsletters and our other publications;
* process donations via PayPal, BT MyDonate, Just Giving and other payment processing platforms that we might use in the future;
* respond to and communicate with you regarding your questions, comments, support needs or complaints, concerns or allegations in relation to 25% M.E. Group;
* publish your name and qualification if you are our patron or one of our advisors on our stationery, within newsletters and our other publications;
* improve our website and for internal operations, including troubleshooting, data analysis, testing, research, statistical and survey purposes;
* keep our website safe and secure.
Other uses of your personal information
We may ask you if we can process your personal information for additional purposes. Where we do so, we will provide you with an additional privacy notice with information on how we will use your information for these additional purposes.
Our legal basis for using your personal information
We will process our members’ personal information to provide you with and administer your membership of 25% M.E. Group and where we have legitimate interests in promoting our charity and our charitable objects, where there is no disadvantage to our members.
We will also ask our members for their consent to:
* publish your name, address and telephone/mobile number on our contact list;
* publish your email address on our contact list;
* publish your date of birth on our contact list;
* publish your personal summary on our contact list (only where you have provided explicit consent);
* use your health information to carry out statistical analysis (only where you have provided explicit consent); and utilise such analyses for the preparation of reports to promote awareness about severe ME;
* engage with our advocacy service by the signing of a mandate giving permission for our advocacy service to act on the member’s behalf.
Our contact list is made available to all of our members by post, which includes members outside of the EU.
Where we ask you for consent, you have a right to withdraw your consent at any time by writing to us at 25% M.E. Group, 21 Church Street, Troon, Ayrshire, KA10 6HT or emailing us at firstname.lastname@example.org with the subject “Consent withdrawal”.
We will also process your personal information in the event that we are under a legal obligation to do so, where required for public interest reasons (for example, fraud or crime prevention or detection) or in the event that we need to establish, defend or exercise legal claims.
Who we share your personal information with
Where you have consented, we will publish your details on our contact list, which is available to other members (including those located outside of the EU).
If your personal information is included in any images or videos taken by us at our events, we may include these on our website and/or in our newsletter or other promotional materials for promotional purposes, where you have consented.
We may be required to share personal information with statutory or regulatory authorities and organisations to comply with statutory obligations.
We may also share personal information with our professional and legal advisors for the purposes of taking advice, as well as our auditors where required.
25% M.E. Group employs third party suppliers to provide services, including IT services and payroll. These suppliers may process personal information on our behalf as “processors” and are subject to
written contractual conditions to only process that personal information under our instructions and protect it.
In the event that we do share personal information with external third parties, we will only share such personal information strictly required for the specific purposes and take reasonable steps to ensure that recipients shall only process the disclosed personal information in accordance with those purposes.
How we protect your personal information
Your personal information is stored on our electronic filing system and our servers based in the UK / EU, and is accessed by our staff / volunteers for the purposes set out above. We utilise data governance polices, retention polices, disposition reviews, anti-malware, DKIM, anti-spam, auditing and reporting all staff activities to prevent unauthorised access or use, damage or destruction to your personal information.
25% M.E. Group provides services worldwide, which means that we may obtain data from regions outwith the EU and such data will be used by 25% M.E. Group in accordance with this privacy notice.
How long we keep your personal information
We will only keep your personal information for as long as necessary to provide you with membership services. Unless you ask us not to, we will review and delete your personal information where you have not renewed your membership with us for one year. One year retention does not apply if you have requested advocacy support services (see below).
Should you request advocacy services your data used to process your advocacy case and provide support will be kept for a period of five years. This is due to the nature of ME (Myalgic Encephalomyelitis) affecting wellbeing and memory. Individuals may have difficulty in recalling information required to process future cases and support services. This helps us to provide better advocacy services without having to reobtain information to provide and process your advocacy services and cases after a period of inactivity. After a period of five years of inactivity with advocacy services we will attempt to contact you to confirm if you would like us to retain the data for longer. This provides reassurance that you won’t need to provide required information should you required any future advocacy support.
We will hold personal data for members’ who are elected onto our Management Committee for the period of their election and for purposes of confirming their identity thereafter and how long they served on the Management Committee. Management Committee nominees’ names will be reproduced for election purposes within our AGM Ballot Booklet and their names and short bio will be published on our website.
Annual accounts and payment details will be kept for a period of seven years. Please refer to PayPal and MY BT Donate policy’s if you used these services to donate to find their current retentions periods for processing payments.
You can exercise any of the following rights by writing to us at 25% M.E. Group, 21 Church Street, Troon, Ayrshire, KA10 6HT or emailing us at email@example.com with the subject “Data protection request”.
Your rights in relation to your personal information are:
* you have a right to request access to the personal information that we hold about you by making a “subject access request”;
* if you believe that any of the personal information that we hold about you is inaccurate or incomplete, you have a right to request that we correct or complete your personal information;
* you have a right to object to and/or request that we restrict the processing of your personal information for specific purposes;
* if you wish us to delete the personal information that we hold about you, you may request that we do so; and
* if you would like to obtain the personal information that we hold about you to reuse it for your own purposes, may request that we do so.
Any requests received by 25% M.E. Group will be considered under applicable data protection legislation. If you remain dissatisfied, you have a right to raise a complaint with the Information Commissioner’s Office at www.ico.org.uk
We may collect information about your computer, including, where available, your IP address, operating system, browser type and version, time zone setting and browser plug-in types for system administration and to collate aggregate information. This is statistical data about our users’ browsing actions and patterns and does not identify any individual.
cookies must be a clear affirmative action – i.e. a pop up for the user to confirm, rather than an implied consent in this policy.]
We also use analytical cookie files. These allow us to recognise and count the number of visitors and to see how visitors move around our website when they are using them. This helps us to improve the way our website work, for example, by ensuring that users are finding what they are looking for easily.
You can find more information about the individual cookie files we use and the purposes for which we use them in the table below:
Name Type and Duration Provider Purpose
[SessionID#27] Session, until browser is closed paypal.com Used to Initialize the payment of donations and redirect the user to payment processer (PayPal)
01AI Persistent, 360 Days abmr.net Used for gathering anonymous technical information regarding the user’s browser, operating system, IP address and screen resolution as well as the user’s navigation on the website.
TLSDETAILS Session, until browser is closed mydonate.bt.com Used to Initialize the payment of donations and redirect the user to payment processer (My BT Donate)
PYPF Persistent, 27 Days paypalobjects.com Use to remember you have visited a donation page (PayPal button).
akavpau_ppsd Session, until browser is closed paypal.com Used to remember you have visited a donation page (PayPal button).
If you wish to delete any cookie files, please refer to the instructions for your internet browser below:
Internet Explorer Google Chrome Mozilla Firefox Apple Safari Opera
Our cookies will contain the domain name https://25megroup.org within the file name.
If your internet browser is not listed above, please refer to the instructions for your internet browser software to locate the file or directory that stores cookies.